Tag Archives: ASD outreach

A love hate relationship

1 May

So, today I’ve been inspired to write this post by my beautiful daughter.

You see, my little princess is feeling a little left out! I guess I haven’t really treated her like the little princess that she is just lately.

I hold my hands up, life has been far to busy and she hasn’t received quite as much attention as I would have liked to have given her. I’m not stating I’ve neglected here, “As if my little diva would let me,” I’m merely stating that we need some one-on-one time without big brother! There has been less chick flicks & girlie pampering but far to many tears.

I look at my daughter with such pride, she is this truly amazing little girl who never fails to melt my heart. Like most siblings of Children on the autism spectrum, she seems quite mature for her eight years.

Over these past few months, which I must add have been pretty emotional for all, I’ve noticed my little girl has mimicked one or two of little man’s behaviours. It doesn’t take a genius to know why she has done this, after all little man gets quite a bit of attention when displaying such behaviours. Alice-Sara (My daughter) has claimed that she can no longer use certain cutlery when eating her dinner as it makes her feel fuzzy (tactile sensitivity). She has stated that it’s to noisy in school and has gone as far as throwing a tantrum over a miner mishap that wouldn’t normally bother her. This isn’t all! More recently see seems somewhat resentful towards her brother. It’s understandable given a good degree of the time he isn’t very nice to her and is extremely hard to live with, but it’s also to do with how much time I need to spend attending to Little mans needs, both social and educational. Last week I almost died of shock when my daughter, who enjoys school refused to attend. She throw me with her claims that she hated it and certain teachers didn’t understand her, yes, something her brother has stated through sobs of tears! She insisted that in-order for her to attend I would need to write some letters and sort things out in terms of her education! She also informed me that maybe it would be better to home educate her for a a bit while things settled down, Her worlds not mine! “Guys this little girl has a stack of friends and is popular with both the pupils and the teachers. Her reports always come back glowing with nothing but prise written all over them”. I knew what this was really about! With Little man’s pending Sen tribunal due to be heard in June, I have been writing statements, emails and filling out a ton of paperwork, mainly parental information needed to form part of his independent SALT and EP assessments. I have also been doing quite a bit of casework for my role as a TSS volunteer. Alice-Sara confirmed this to be the issue when I insisted we talk about it on the way to school when she so angrily stated why storming towards the front door, “Oh, You would have done it for him.” Yes, ‘him’ meaning Little man!

Alice-Sara loves her brother, however things are not always easy for her. All brothers & sisters normally quarrel, I’m not denying that, but come to our house, I promise you its beyond ‘Normal’!

Now, it’s not always the little dude who is the one to kick things off, my daughter has become accustomed to setting him off and she’s learnt how and what buttons to press in-order to get her desired reaction. However his rigid thinking and tendency to be inflexible and controlling has either brought her to breaking point or reduced her to tears. Lately she can’t seem to breathe without it bothering him. Just a few days back little man treated the family to a night on pain-killers. My daughter needed Calpol (children’s medicine) for her headache and although I had just taken a couple of good old paracetamol for my own chronic headache, I could have done with something a tad stronger like a few handfuls of tranquillisers to knock me out for the rest of the week!

Alice-Sara decided that having tried a ‘Fish Finger’ for the first time they were actually quite yummy. When dished up and the kids sat down for dinner, little man’s eyes wondered across the table in the direction of her plate. “OH NO…”

Little man: “Mum, you’ve given Alice the wrong dinner!”

Before I could answer…

“No, she hasn’t. I like fish fingers now.” Announced Alice-Sara.

Well, what happened next wasn’t anything unexpected as it happens on a regular basis! A full-on blow up was had that consisted of him claiming that his sister shouldn’t be allowed to like fish fingers as he likes them! “She’s copying me,” and “You’re horrible mum! They were my fish-fingers!” Those statements and a load more, accompanied together with kicking doors and throwing whatever was in his reach went on for a good proportion of the night. A real head banging event!

Last spring when things were really difficult at school for Little man which resulted in some challenges at home, I began to worry for both my Little man and my daughter. His aggressive behaviour was at a point that was deeply concerning. We went on a day out accompanied by my friend who ended up having quite an eventful time and one I’m sure she wont forget for some time! It was during this day out that I decided we as a family needed to seek professional help & support! Alice-Sara was happily flying a kite on the heath following the ‘Bike & Kite’ festival we had just attended. Out of nowhere came little man who had decided it was time she stopped! He run over giving her a massive shove that saw her fall to the ground. No tears followed, she didn’t even complain, just got up bushed herself off and returned to the joy of flying her kite. In that exact moment I realised that I had just witnessed something that scared the ‘crap out of me!’ Was this the ‘Norm’ for her? Did she consider it an acceptable thing for her big brother to have done? Would this little girl ‘my little girl’ grow up thinking it was Ok to be pushed around? I don’t want my daughter to ever allow herself to be treated like this, not by anybody including that off her big brother! It was lucky that at this time I was in contact with a lady who works for the autism outreach service for our area and how lucky was I when she agreed to visit me at home and have a chat with my little princess. I also gained some good ideas on strategies that I could implement that would hopefully stop little man becoming so physically aggressive towards his sister. It took some effort but results were seen, his hitting faded out and Alice-Sara would no longer turn a blind eye to his behaviour.

Sadly these past few weeks something has changed in the little man and myself and daughter have received some unwelcome attacks as a result. He even attacked his sister on a packed train when returning from the West End because she, ‘Disrespected Transport for London’ when placing her tired little feet on the seat she was sat on.

How can I make it stop? Consistency is our only hope. Strategies that we used last year have been tried but sadly failed, however this mum is on a mission and won’t give up on finding another strategy that works!

I’m guessing a number of parents of children on the autism spectrum will agree… consistency is a ‘must’ for all children but isn’t the easiest thing to apply when dealing with the child with Aspergers and they’re challenging behaviour.

To bring this post to a close I’ve finished with something positive. After all this talk of violence I think I need to! So, besides sharing some contact details for sibling support groups that some off you may find helpful, I’ve also included this beautiful picture that I captured yesterday on the train when on our way out for the evening to see a show in the West End to celebrate the Royal Wedding. Little man has his arm around his sister who happily excepted a hug as opposed to a slap or a punch! No-one requested he gave her a hug, it’s something that you just don’t see him do! I don’t know who was more surprised me or my daughter!

The Charity Barnardo’s run a number support groups for siblings of disabled children around the country. Some groups are mixed for both the Sibling and their brother/sister with a disability, whereas others are dedicated to the sibling alone. (028) 90672366 is the contact details for the London regional office. If anyone requires the number for their area drop me a comment or contact the above number as I’m sure they will help.

Contact a Family is another organisation who cater for siblings of children with disabilities. Further info can be obtained by calling… 0808 808 3555

Mencap are happy to put people in-touch with their local sibling support group. The number for England is: 0207 4540454

Kids are an organisation which runs play, education and social initiatives for disabled children and it is suggested that siblings may also benefit from their clubs, outings and residential weekends, and can be contacted on: 020 7359 7635 email: enquiries@kids.org.uk

Tears, Buses and awards

9 May

So it’s been a while since I’ve updated on the subject of life at home and school. So heres the latest.

HOME

The behaviour chart seems to now be having a sight effect on little man. He didn’t really care about stickers before but since his sister Alice got her bonus reward of £10 on top of her normal pocket-money little man has sat up and took note. But my did he go on and on with his blandishments and pleas for the same reward as his sister! Yep mummy was a BAD MOTHER and he went on to more inappropriate name calling, So much so it’s better I don’t write them down here in the event I may offend others. He spent the whole day till the next day swapping from one technique to the other. None being particularly helpful to his case but nevertheless he consider it to be wroth a try! Well I am exceptionally pleased to report that despite his tantrums escalating into full on meltdowns and me heading to bed early hours with a pack of painkillers in hand due to receiving a verbal head bashing for hours  I stood my ground showing no mercy and indeed not giving in.

Little man has decided to put us through the hell of bedtime once more. As most know already getting little man into a bed time routine is hellish. Yes children with ASD like structure and routine but when it comes to bed then well a lot of that flies out the window. It’s like the Melatonin has stopped working. I know he can over ride the medication but he often goes with the flow resulting in him getting some much-needed sleep. The thing with children like Little man is there tends to be no in between. Your tired or you’re not! Your staving hungry or not hungry at all. There seems to be no build up to anything little man does. When he goes to bed and to sleep he just goes, One moment his wide awake the next his sleeping. And when his awake well it’s the same his WIDE  awake. Being his parent  who is observing his recent changes in behaviours and reluctance to sleep I have come to the conclusion that the worries little man faces surrounding school and his continued obsession with buses are both contributing factors. School is up and down for the little man right now. He recently had a physical fight with his “best friend” Alex that had escalated as a result of a play fight which took place in the classroom. Little man ended up with a pretty nasty mark behind his ear. I will write more regarding school a tad further on in this post right now I want to write a little more about Little mans obsessive behaviours and how these are now beginning to affect everyday life. Little man used to like both Trains and buses but it’s easy to see that now buses are top of his interest list. He lives and breaths buses. I’m not extracting when I say buses are his LIFE. From the moment he wakes till that last moment of conciousness they are fixated firmly  on his in brain, No wonder he has trouble working in school. It’s become very intense and he is very focused on anything resembling buses. His Father got him up and dressed and out the house for school with only minor problems. All this because of a promise made by Dad. Get up and ready for school and I will take you on the bus. Not just any bus but the 194 to west Croydon and back after school. How in god’s name he got through the school day with that extent of excitement mounting throughout the day surprises me. Don’t get me wrong I’m pleased he has an interest and what the hell buses aint that bad a thing to like BUT it’s just very over powering at this present time. Yes we can use the buses as a reward to engage him in displaying good behaviour at home and school but at times I wanna scream “SOD THE BLOODLY BUSES” No I haven’t done this but I’m not denying the moments been close. Having an important conversation with your child only for them to start beeping like bus doors is more than annoying but please go into any conversation with little man with caution because the possibility of him dominating it with his “special interest” is pretty likely. I have been lucky enough to be excepted into a course which I think is run by the ASD outreach in my area called Early bird plus. It’s a new course as it used to just be the early bird which was for parents of very young newly diagnosed children. Now its up to 8 years ( Little man is 9 but thankfully It was over looked ) It is fantastic it’s a small very personal course with about 10 parents but we are all given the opportunity to take two others one being family or close friend the other being a professional from school. I have researched and read a ton of books relating to little man’s Aspergers in order to educate myself but there is always room to learn more. It’s great meeting like-minded parents and the organisers are so nice and more than understanding. I loved that you could see it was more a passion to bring awareness then a job. I got to voice my main concerns at present when It was my turn to speak about my child. Well as you may have guessed School and obsessive behaviours were at the top of my list. These were followed by concerns of bullying towards his sister and use of inappropriate language already after the first class I feel a much more positive person and parent. Looking forward to the coming Tuesdays when I plan to attend with a close friend who relates and is non judgmental towards my little man.

SCHOOL

Well we had the Meeting and lets just say it wasn’t what I expected but then again what did I expect? What I was most disappointed with was the fact it was only the headteacher , the Senco/assisting headteacher and Little mans class teacher who I must add has always been extremely happy to discuss my sons progress and he really seems to care what happens to him. What a shame he has a classroom of 30 something other children. I took a friend and some on from the parent partnership service. Yes I expected a good deal more professionals to attend, We had already postponed and one of the reasons was in order for it to be convenient for others. Regardless of this disappointing turn out the meeting went a head as planed. There was a lot we didn’t agree on and a reluctance to discuss past events given some were only weeks if not days ago. I do wish I had been so much stronger as at the very end I did cry a little. I tried so bloody hard not to but I’m just human at the end of the day and this is my child we are discussing. It’s not easy having him excluded and as his mother being powerless to stop it. The parent in partnership worker felt the meeting was extremely tensed we were in need of someone outside the cycle to help the strained relationship rebuild as yes it was clear to all there is a huge breakdown between myself and the school. She did suggest a mediator which I’m good with however the school seemed a little less keen but you never know maybe. Well the good news is that little man now has good provisions and accommodations in place. He has his own TA for the best part of his structured day ( sadly not much of unstructured time where I consider much of the problem to be ), his own workstation with laptop and visual timetable. He has been taken of the going for gold system as it isn’t working for him. The going for good is a system setup for every class. Each child starts on a gold card and throughout the day can have it turned due to bad behaviour, Once your on RED your out that class and mum and dad are getting a phone call or letter. Well as you can guess little man hit red a lot of the time. I would go as far as to say he sometimes had his card on red before morning play. So he now has his own behaviour chat and with it his own rules which to me seems better for now. We have also started a contact book which seems a good move as I can warn them of his morning moods and report anything I feel will distract his day at school. I also get to read how things are going and see his progress daily. This is something I wish we had started long ago. So yes at present the level of support is good but the Headteacher said the problem is that the current level of support on offer is not for a long period as the resources and staff it uses hence the reason an educational assessment of needs is needed. But the likely hood of this being grunted is low and this was something we were both in agreement on.

In relation to exclusions have they stopped? Well I really thought that progress had been made and yes exclusion were being avoided. On the return from the Easter half term things seemed pretty good but nothing lasts forever and he was excluded on the 5th May for hitting the teacher. It was said he threaten to hit her then swung his arm and his hand hit her face ( This is what the letter stated ) And then there was a number of other reasons basically the same ones as always so lets skip that and go back to the hitting afterall that’s pretty massive stuff. Little man again got upset claiming to be playing with the teacher he said he threaten in a playful way and the teacher was laughing he said he did put his had on her face but didn’t slap her it was soft just playing. It’s my opinion that my son has problems relating with adults in a different way from children. He don’t see a difference and if anything sees adults as peers. He regards a certain TA as his buddy. This lead to another exclusion where it was said he hit them, Again he says it wasn’t meant this way he was playing. The only positive thing is that it’s for the shortest time possible this being just one day. Still will exclusion have a good effect on little mans behaviour? I don’t thing so, It hasn’t so far, why now? We still have to reintegrate him back into school which is always a difficult one as he has to attend part of the reintegration meeting which mostly gives him the hump as he wants to go to class and not sit and discuss past behaviours. Needless to say this has to be done and is an important part of reintegration but that still don’t make the situation any easier.

So school has been a very mixed bag these past weeks but I do wish to end on a positive as often this isn’t the case. Well Little man received an award at school for his mathematics. The ward meant a certificate which stated Math genius. It was presented in school assembly a place little man often struggles resulting in him shouting out and disrupting the whole school, so it was nice knowing something really positive was taking place. I was so proud I almost cried when he showed me. Ok that same day he had a classroom fight and kept leaving the class without permission and was a bit disruptive in class but to say I was proud was an understatement. To see him with that certificate was so much more for me then it maybe would have been to another parent with a child presented with the same award. I’m not saying they wouldn’t be proud of course they would but for little man its massive! I can not tell you the last time he brought a certificate home. His sister yer all the time which made this extra special it was like a rare gemstone. I have displayed it proudly on the fridge and I’m hoping it’s given some company really soon.

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